If you remember from my testimony, I told you that I am living with a very finnicky brother who doesn’t like certain people if they give off negative vibes, doesn’t like using public bathrooms, and hates boarding other people’s cars, though he didn’t mind boarding busses back then. I’d like to talk a little bit about one of his best, and probably only positive experience, that my brother has ever had in school. If I upload the court case audio recordings that relate to it, all the parties identities will be posted for everyone to see and hear. This wonderful man was a teacher of the visually impaired for my brother and me. He was the one who had sued the North-West Regional Education Service District in July 2012. While litigation originally commenced in 2011, the actual trial was held a year later. I purchased the court records from the courthouse on Monday, 5 March 2018. He previously lost his vision for about two years, but a cornea transplant had restored his sight. Then he met somebody else who was blind, and it interested him. He took up music, journalism, and something else I can’t remember while he was in school. When he went to study at Community College, he helped a student who was blind get through chemistry, because the professors were claiming that a blind person wouldn’t be able to take that class. After that, he moved out of state where he married and adopted three kids. He and his wife applied to become foster parents, and over the next five years, they adopted fifteen foster kids, mostly kids with developmental disabilities caused by drug use during pregnancy, and others due to brain trauma. They kept the last child because they had reactive attachment disorder, and they wanted to give that child a good home so they wouldn’t feel so abandoned. Losing his job with the regional education service district really put a toll on his family, especially this child, according to court records.
Anyhow, he had an opportunity to come back to Oregon to work at the Oregon School for the Blind in 2008, and he learned that the legislature was planning to shut the school down because they were claiming that there were only twenty or thirty students going at a time. He and the rest of the OSB staff testified at a few hearings, trying to convince the legislature not to shut the school down unless they had a plan on how to transition these kids and help the rest of the students, even if they never attended the school in the first place. All the things they had told the legislative members fell on deaf ears, and the staff eventually looked for employment elsewhere. To try and make the long story short, this teacher was asked by the vision service coordinator to work at the ESD in Fall of 2009. When he arrived, he was given a caseload containing eight or fifteen students, I can’t remember how many. He asked which city or county he was to be working, but all his supervisor said was that he was to be working around 185th. That didn’t make any sense, so he asked specifically where he was to be working. They finally provided clarification, and he started working accordingly. That is when I happened to find out that I was on his caseload, and that is how we ended up striking up quite an acquaintance.
When our teacher was hired, he thought he was hired to help the ESD spend the $2.985 million that the legislature had set aside. Instead, he was told by the vision service coordinator’s supervisor that someone else was already in charge of that. Well, over the course of that year, he noticed that the ESD wasn’t doing anything more to enhance the level of service that these students were entitled to according to the new law. He went to numerous staff meetings, talked with parents and teachers, and wrote up several letters to his superiors. Instead, he was written up multiple times, complaining that he was edging over the boundary lines from service to one of advocacy. They had also said that the ESD was not there to serve students. They were there to serve the districts.
‘In a meeting with [the vision services supervisor,] I was told that “We are an education service district. That means we serve districts.” I objected to this and told her that I do not serve districts. I serve students. By doing my best to serve students I fulfill my role as an ESD employee, and the districts are served as well. I won’t change. This is what you got when you hired me.’
He wrote these daring words as part of a four-page rebuttal letter, which he handed over to the HR department, in response to a letter written to him by his superiors that if he continued to do what he was doing, he would be terminated. Everybody knew that making statements like this were guaranteed to be protected by the first amendment, and they knew they couldn’t sack him on these grounds. Once they found their first opportunity when the TVI had let his teaching license lapse for a month, they did.
While all of this was going on, he had an opportunity to meet my older brother. He and I were in twelfth and tenth grade, respectively, and he and I were in the same school. On the first day, he saw that my brother was raging and angry because he needed something, and in this case, he just wanted to go to the bathroom. So the teacher tried to find out if my brother knew how to say that he needed to go to the bathroom, and within a few days of coming in each morning, and signing to him that this was the bathroom, it became very clear to him that My brother could communicate what he needed. Before that, the teachers were making him wait until they said that it was okay for him to use the bathroom. Nuh-uh! When nature calls, you’ve got to answer it, otherwise you’re going to end up with a very nasty message. He simply told the teachers that if my brother wanted to use the toilet, nobody should stop him. Just make him say where he was going. Over the course of the next five months, The TVI worked with my brother extensively, teaching him about thirty signs, and utilising a calendar system to help him develop a concept of time, choice, and sequence. Once My brother’s days became predictable for him, his acting-out behaviours were dramatically abated. The TVI was also directed by a deaf and hard-of-hearing consultant as to which signs were appropriate to teach somebody who was both deaf and blind. Because casting someone with multiple disabilities aside in the bureaucratic world is unfortunately not too uncommon, my brother never had a specialist who knew how to work with prelingually deaf-blind people.
The TVI once recalled a time when My brother was told that he should finish the task first before he could play with the cassette player and put it directly over his ear. I don’t know if he could hear a little bit, or if he liked the vibration, but My brother signed ‘no’ and moved the tape player to the ‘now’ position in the calendar tray. Rather than forcing My brother to finish the task, The TVI congratulated him and told him ‘Good job!’ My brother told him so clearly that he didn’t want to wait, he wanted to do it now.
In another incident, my brother was dragged to this mysterious place indoors where people picked up giant rocks, put them on a weird frame, pushed them forward, and then got more rocks and did the same thing, over and over and over again with no end in sight. As far as he knew, those rocks just went to the rock quarry. He got so mad that he ended up refusing to budge. Of course, you probably figured out that he wasn’t picking up rocks. He was picking up bowling balls and pushing them down a ramp. But, because nobody told him what this was, why he was doing it, etc, there was no way for him to associate that this was fun. He couldn’t see nor hear the pins clattering about as the ball hit them. He couldn’t hear when people cheered. How could anybody think that was fun if they didn’t know what was going on? Fortunately, the TVI arrived and attempted to explain the situation to the rest of the special education teachers, including my brother’s one-on-one. He tried to show my brother how the ball knocked the pins over, but still, it’s really hard for him to associate this activity as being fun.
In mid to late January of 2010, his supervisor came to do a surprise evaluation on The TVI’s teaching skills, and when she saw him communicating with My brother using sign language, she waited until that was over before asking him why, if he was a teacher of the visually-impaired, he was teaching somebody sign language. He wasn’t a teacher of the deaf, and it was only the teacher of the deaf’s responsibility to work with that student. The TVI said, ‘Well, I’m not an English teacher, but I communicate with my students in English. I know German, and if My student could only speak German, I would talk to him in German. Why need I be a teacher of the deaf to communicate with a deaf person using signs?’ In other words, he was objecting and saying that anybody who happened to know another language besides English should be entitled to use that language to communicate effectively with that student. I had always thought that when employers hired you, they want you to have great skills. I wonder what would’ve happened if The TVI had said in his resume that he was proficient in American Sign Language. Well, I can understand to an extent why they had a problem with this. They didn’t want someone who wasn’t certified to teach my brother flawed sign language.
In March of 2018, I spoke with the supervisor’s successor, who held the same attitude that his predecessor had held, mainly that a licensed teacher should be the one to communicate with a deaf or deaf-blind person. He also told me that I should look at his former IEP to find out if they had specifically indicated why My brother was not eligible to receive services for the deaf and blind. It was likely that he was declared incompetent, and unwilling to learn, and they didn’t want to spend a lot of time, money, and resources on him when it could’ve benefited other people who were more apt to strive and succeed. Instead, he was shoved aside and transitioned into a three-year day programme at a place called ARC. It stood for Association for Retarded Citizens. Nobody taught him sign language while he was there. They just had him work on basic occupational skills during that time. His IEP team also had this ridiculously stupid ideology that he should only use a calendar system when he was at school, but not when he was at home, because according to them, home is for relaxing, not for learning. But the TVI argued that the calendar system and sign language were going to be his primary means of communicating with others for the rest of his life. It wouldn’t be fair to him to deprive him of these things just because of some silly belief that he needed to understand what the difference between school and home was. For that same reason, it didn’t make sense that he should be talked to English when he was in school, but that he should be talked to in Spanish when he was at home. This obviously put my mother in a quandary, because she has to get over the fact that the school prevented her from implementing the resources that could’ve helped him go a long way, and now where are we?
When My brother started getting used to not going to school every day from 2013, he started getting things his own way. He went about the house totally naked, and he refused to put on certain clothes, and more recently, any pair of shoes. He was able to wear some clothes when we went out, but now, he only wants to be naked as a way of saying, ‘if I don’t put on clothes, I won’t be able to go out. If I don’t go out, I won’t have to worry about where the bathroom is or deal with things that do not make sense to me.’
In mid to late August of 2016, we discovered that My brother would not let himself be coaxed to get inside my aunt’s friend’s van. Our minivan’s steering column had malfunctioned, and we needed to get home. My brother whined and squirmed, trying to get away. He flat-out refused to get in. So, my mother was obliged to leave him with our aunt and take me home, then go back to walk My brother home in the heat.
And on March 9th, 2017, the van broke down a second time in front of the store, and since My brother had clearly demonstrated that he didn’t want to get inside another person’s car, he was obliged to walk home in the rain. Since my mother was then deprived of any means to get more food, that left me having to do everything I could to survive. As I had already deposited three hundred dollars into the secured credit card, I had no other funds available, so I had to overdraw my bank account and get a cash advance to get more food from nearby fast-food joints. My card arrived a week later, one day after my birthday, and I was able to cover the overdraft. I was able to get some food for the remainder of March, and I thought things would get better come April. I was using Lift, as in the Uber and Lift app.
For whatever reason, probably due to a technical error at the bank, I double-paid off my credit card when I had no funds available to pay it off, so I ended overdrawing my bank account to over three hundred dollars. I knew I couldn’t pay it back until May, so I began looking at other funding sources. I tried to dispute this extra payment, but it was already too late. My attorneys from LegalShield couldn’t find anything wrong, and I didn’t know about the Consumer Financial Protection Bureau to do anything about it. I even asked on Quora, and someone recommended that I switch over to a credit union, as their nonprofit status would make them ideal for my situation. I didn’t know how to pawn or sell items yet until a year later. At any rate, I was able to get approved for a second credit line at PayPal for $500, and I used it to cover the overdraft. Combined with the secured credit card and the credit line, I was in $800 of debt.
I knew that Summer and the hot weather were fast-approaching, so I had to think about what I could do to reduce my anxiety and stay cool. I was able to get a prescription for Clonazepam, which was also not covered by Care Oregon. I started taking 0.25 MG once or twice a day, and at first, I didn’t find it helpful, but the more I used it, the more relaxed I felt. On the first warm day of the year, which was my teammate’s funeral, Wednesday, 3 May 2017, we reached the eighties. I took 0.75 MG throughout the entire day, and as I was riding home from bowling, I felt extremely sleepy, and I was able to get through the next day without problems. My doctor also prescribed an antidepressant called Sertraline, a selective serotonin reuptake inhibitor. It wasn’t meant to be used to treat anxiety, but they also wanted me to not get addicted to the benzodiazepine, so I began taking that regularly.
I was paying approximately five hundred dollars to both of my credit accounts, and since I wanted to boost my credit scores as much as possible, I continued to make payments every time I charged my card. I was caught up in a cycle of paying my debts and then immediately creating new debts. It wasn’t easy, and I realised that I would have a much better chance to get out of debt when I got my deposit back in March of 2018.
In November of 2017, I went to the bank to increase my credit limit, but because I was using a secured credit card, I had to deposit another $100 to increase it to $400. Combined with my PayPal credit line, I then owed $900. Since PayPal did not report anything to the credit bureaus, I only paid my secured credit card in full each month, while I only paid part of the debt to PayPal each month.
I was desperate to get food during the time that the van broke down that I reached to as many agencies as I could, and I eventually made a connection with the Helen Keller National Centre. The representative from the Seattle regional office came out to our house and heard testimony from my mother, My brother’s case manager, The TVI, and me. The representative and I worked throughout that summer and fall of last year and part of this year to see how we could get funding to bring two staff members from New York, of different genders, to evaluate my brother and train the new staff member and my mother on how to communicate effectively with him once they had drawn up a support plan.
I previously introduced Michael to a DeafBlind individual who often participated in DB events, and he gave us some resources to reach out to. When he told the HKNC regional representative all that he did to help my brother, she was really impressed by his ability to break down language into simple steps, and she asked him if he would want to work as a personal support worker through the state Office of Developmental Disabilities, and the case manager said that they had already sent out an application for him to fill out, but he told us that as much as he would love to, he felt that the compensation rate was too low for someone who was a teacher of the visually-impaired. So, he said that he would volunteer his time whenever he was in the area, as he was always travelling around the country.
The state of Oregon is only willing to pay $14.65/hour to providers, except a few more cents if they have been certified through any of the classes taught by Oregon Homecare Commission, or the Oregon Intervention System. I tried to see if there was any way to raise the salary, either through administrative, legal, or political action, but they told me that it would be almost impossible. They thought I could probably raise it to $30/hour, and we could find more people willing to work at that rate. But there were evidently two reasons why we had so much difficulty finding qualified providers.
- Many of them were not trained on managing challenging behaviour, so they often chose to work with customers who do not have behavioural problems instead of putting their safety at risk. We had a few providers quit after just working with him for a few months because they kept getting pinched repeatedly or scratched, hard enough to cause bruising or drawing blood.
- Many of the providers my mother requested often only spoke Spanish, and because many of the training resources were in English, they had no way to access them. So, we decided to bypass that altogether and get some providers who only spoke English, and who could use Google Translate to communicate with my mother in Spanish, or have myself act as a translator.
When we realised that those things were what had kept us back, the case manager decided to reach out to everybody, not just a specific number of providers that my mother had requested, such as being
- Female,
- Spanish-speaking,
- and physically active so she could take my brother on walks or swimming lessons.
Before I say this, please know that I am not trying to be prejudiced towards anyone from any culture, because I myself am bilingual and come from a Hispanic family. But I personally felt like many of those providers were not very good problem-solvers, but that is not to say that there aren’t any. I’m sure there are quite a number of Spanish-speaking people who are great problem-solvers out there, we just haven’t found them yet. I actually made a short speech in 2009 when I went to a Service Employee International Union, and there were some local reporters there. They wanted inputs from siblings and other family members of children who were developmentally disabled. I gave a clear account of how it has impacted me, and they later told me that my presentation was very moving, and that they were very sympathetic about my situation.
In February of this year, I made a connection with the executive director of The Hull Foundation for the Blind. That is where I did my sky-dive five years ago. The TVI donated $120,000 to them as part of his settlement. The person who worked there turned out to be the past district governor of the Lions Club, and they agreed to help us raise the funds to start work on saving my brother’s life. Click here to donate. They were also very incensed by the attitude the ESD had held towards people like my brother. They told me that the ESD didn’t want to admit that they had failed duly in their duty, and that’s why the new vision service coordinator told me what I told you. It is quite embarrassing when a large entity, corporation, or bureaucracy loses to one individual in a civil case as this. Still, I can sort of understand to an extent why they strongly objected to this.
Well, since I couldn’t go back to school for several reasons, I decided to try my hardest to get the services my brother should be entitled to, since our mother doesn’t seem to be well-informed about the resources that are available to her. She, speaking only Spanish, and having attended but five years of school so she could work in the farm, was never prepared other than what, according to her, God had given her. The problem is that she and I have different viewpoints about how my brother’s needs are to be met, and we can never come to an agreement. My mother thinks my brother’s needs are fine just the way they are, whereas I think she’s sheltering him too much, and not disciplining him enough, and that she’s spoiling him. She argued by saying that I am wanting attention and food, and that My brother is stubborn, and not willing to accept anybody else other than his mother. True, everybody needs attention, and everybody needs food. I like different foods that my mother and My brother usually eat. Besides, if my mother dies, my brother has to be tolerant to having someone else take care of him, especially now that he won’t leave the house. These arguments seem rather tenuous, in my honest opinion. So, I often must show my mother how to prepare things for my liking. It is also true that when a sick or disabled family member gets all the attention, their siblings would feel left out and might feel as though they were less than what they really were. I’ve envied other families who could afford to go on vacations and explore the world. Because of my brother, we can’t do that, so I’m usually the one to go alone. When my brother was a lot younger, it was easy for him to go along with us.
At the suggestion of the HKNC representative, I went to seek mental health therapy at a nearby location, and it is through they that I came up with a plan. My therapist had asked me what part of my experience that happened to me in Arizona did I take with me that I had turned it into something much bigger than it actually was, and something that was least likely to occur, and let it control my quality of life. I don’t have a clear answer to this question, but I do know that this is just one of many negative things that have happened to me in the past, and I guess, as sort of a self-defence mechanism, I avoided similar situations so I wouldn’t have to deal with another experience. And yet, I should learn to prepare for something like that in case it does happen, so that I have a plan to make sure someone will be there when I need them. I told my therapist that I was afraid of losing my balance from the constant rocking sensation, or that I would be trapped in a hot and stuffy place, with no way to cool down, or that I would faint, and nobody would help me. I was also afraid that there wouldn’t be enough food. I also related to my therapist about how, when I came back, I’ve had frequent flashbacks and nightmares of either biting my brother back whenever he bit me severely, or how I called 911 every time I felt dizzy and had an out-of-body experience, sleep paralysis, or astral projection. I’d feel as though I were struggling to pick up my iPhone so I could hold down the home button and tell Siri to call emergency services. In my dream, I was a frequent 911 caller, and the dispatcher had assigned me an account number so that I wouldn’t have to tell them what I was dealing with every time I called. Usually, the dispatcher would tell me to try to stay calm, and if I were feeling dizzy, that I should try and get water until they could come to rehydrate me. These dreams stopped sometime in late March of 2017, and I haven’t had any since then, except for maybe one or two ambulance rides that occurred once or twice in 2018. I actually rode in a type II ambulance when I donated too much blood in June of 2016.
So, here’s what I think. Our brains hasn’t gotten used to the changes in our culture. Our brains perceived something as a threat, so we get physical symptoms that alerts us of danger, and we are prepared to run or fight, or even freeze. I think this post from WebMD has some good information on what constitute triggers. Going through such an ordeal would’ve probably caused my brain to not create short-term memories, but I guess it didn’t do so in my case, or else I wouldn’t have recalled everything in great detail. However, it were the thoughts, the places, and the dreams that were extremely triggering.
The older we get, the more sensitive we become of our environment. Think of the heat in Arizona as a threat. My brain was like a watch person. It kept making sure I was staying alive all the time. When we take anti-anxiety pills or anti-depressant pills, we’re telling the brain to stop keeping watch temporarily and pretend there’s no danger. Make sure that neurochemicals like serotonin stay in the brain longer, or create more serotonin to stabilise your mood.
Some people may say that a simple heat exhaustion is not itself traumatic. But I disagree. Anything that can cause you to change your entire brain chemistry in a short amount of time is considered trauma. I did some Google searches and found that I’m not the only one who has agoraphobia and panic disorder, and who has had a past history of heat exhaustion and heat stroke. I’m sure there are others like myself who are wondering the same thing.
Well, once I was through working out the negative experiences I had in 2016, my therapist and I talked about how all of my plans have been put on hold because of the massive amount of time I had to put in recovering from that ordeal. As of this year, things are slowly getting better–slowly but surely. I feel now that the best times for me to travel is early in the morning and late at night during the summer. Otherwise, I feel fine travelling during the late fall to early spring. It’s been a while since I started dealing with these life-altering symptoms, and I want to resume a normal life, free of ringing in my ears, dizziness, and imbalance.
Now that it is 2019, I helped my mother get the things needed to have a central air conditioner added to our furnace last year from Four Seasons Heating and Air Conditioning, and it has worked wonders! I figured out how I could cool the rest of the house down. I was confined to my bedroom in all of Summer 2017 because I was using a window air conditioner.
Anyhow, I had said before that I wouldn’t be able to get out of credit card debt until March of 2018, and that was true. However, due to some not so favourable changes in my income, I had to enroll in a debt management plan that was licenced by the National Foundation for Credit Counselling. That’s why I’m doing everything I can in my arsenal to fight back by publishing my manuscripts, creating and monetising podcasts and other things. In addition, I sold some stuff on eBay and a local pawn shop, as well. Also, I learned that Next Door offered a way for neighbours to buy and sell stuff. So, I ended up having to sell all my musical instruments.
I had literally lost enjoyment of life because of what I went through, and I made some enquiries as to whether I would have a reasonable cause of action for personal injury because of all that I went through, but my lawyer told me that there were no reliable witnesses, and it’s possible that I might’ve signed a waiver, which I don’t remember doing.
Well, I think this has been a rather long enough post. I hope that you have found everything to be informative. So, my current goals are to start venturing out again in small steps. I already began this by attending a retreat at a political advocacy programme called Catalyst, and start learning how to make pottery on the wheel. In addition, I’d also love to learn how to build a brick-and-mortar ham shack or studio. But, these things cost money, which is why I’m going through all this trouble to get the life I need and want. So, I began looking at investment opportunities, and I learned about Edward Jones. It is through them that I now have a mutual funds account.
In the next post, I will be talking about what you can do if you want to build your credit history for the first time, and what you should look out for, so that you don’t end up making the same mistakes I made.